The Experience
For this patient visit, I shared participation 50/50 with my preceptor. A 7-year-old female patient was accompanied by mother and brother for annual well-child exam. Patient scored a 28 on the Pediatric Symptom Checklist for Child 6-16, which is a positive score (greater than 27). The True-tone Hearing screening test was performed and passed. The vision wall chart was attempted, and patient is currently established with an eye doctor and has an appointment scheduled in one week.
She has a past medical history of autism spectrum disorder (diagnosed 3.5 years ago), specific developmental disorder of motor function, mixed receptive-expressive language disorder, and today was diagnosed with hypertrophy of tonsils with hypertrophy of adenoids. Mom reported some muffled voice concerns, loud breathing when sleeping, discipline issues at home, and concerns that child struggles with anger/emotional regulation with siblings. The exam findings revealed normal vital signs, 2+ tonsils without erythema or exudate and no other significant findings. There is a family history of tonsillar enlargement.
A release of information was signed by parent, in order to obtain diagnostic records for autism disorder for the clinic records, as school is wanting the diagnosis records to formulate the IEP or interventional education plan. I also requested in-house behavioral health counselor to visit with parent regarding emotional regulation concerns. A referral was made to the local otolaryngologist for possible tonsillectomy and adenoidectomy procedures, because of the adenotonsillar hypertrophy, muffled voice, and obstructive concerns. These issues are causing problems for sleep, which may in turn be increasing behavioral problems. According to Nationwide Children’s (n.d.), “School-aged children who do not get enough sleep are more likely to have behavior problems” (para. 4).
Upon review of her immunization record, it is notable that she is behind on all vaccinations, so the following were recommended to begin the catch-up schedule: Tdap, Hep A, Hep B, MMR, varicella, and inactive poliovirus (Advisory Committee on Immunization Practices [ACIP], n.d.). The immunizations were not carried out during this visit because of caregiver refusal, as the parent does not consent to immunizations at this time. I discussed the importance of immunization per ACIP schedule, as well as recommendations through Centers for Disease Control and Prevention (CDC) and the American Academy of Pediatricians (AAP). Discussed concerns with risk of delaying immunization, including risk for child death due to vaccine preventable disease. Parental vaccine refusal form completed.
A reason for refusal is not needed for the medical record, unless there is a medical indication for not receiving the vaccinations. Why? Because regardless of the non-medical reason, the child is missing out on multiple opportunities to be protected from serious illnesses that could result in permanent disability or death. It does not matter why, because the result does not change. Public school is typically the system that requires a reason, and acceptable exemptions vary by state.
In Kansas, there is a form for medical exemption only. If parent/guardian is refusing vaccinations based on the child being “...an adherent of a religious denomination whose religious teachings are opposed to such tests or inoculations...” then they must provide a statement written and signed by one parent or guardian (Kansas Department of Health and Environment [KDHE], 2019, p. 1). I do not know of denominations that have such oppositions, honestly. I am still searching though!
Side note: Despite APRN now having authority to practice independently in Kansas, the medical exemption form (and several other state forms) still requires a physician’s signature, and specifically indicates MD or DO under the signature line!
The visit note in the medical record for this patient reflected the following results:
- DTAP/HIB/IPV (Pentacel) (Not administered - Refused: Parental decision).
- Hep A (VFC) (Not administered - Refused: Parental decision).
- Prevnar (PCV-13) (Not administered - Refused: Parental decision).
- MMR (Not administered - Refused: Parental decision).
- Varicella (Not administered - Refused: Parental decision).
- Hep B ped/adol (Not administered - Refused: Parental decision).
Again, the reason for refusal is not appropriate for the medical record unless it is a medical reason, which is uncommon. Some instances of medical exemption may include an allergy to some immunization components, having an immune deficiency, or having an illness such as cancer.
In Missouri, they do not mince words when describing the unexpected consequences that may befall the unvaccinated child and family.
“To protect those who cannot be vaccinated and the entire community, unimmunized children could be excluded from school and child care during disease outbreaks. Exclusion from care can cause a hardship for the child and parent, however no exceptions are made, regardless of the circumstances” (Missouri Department of Health and Senior Services [MDHSS], 2022, para. 3).
Thoughts and Feelings
This is a tough one for me. I spent four months as a contractor with the CDC (through Maximus) developing scripted responses and training materials with an aim to resolve vaccination hesitancy. I thoroughly enjoyed the experience and gained great insight into those reluctant to trust governmental agencies with their health. Primarily these were folks that fall into the minority classification, and possibly with a lower health literacy level, yet with valid reasons for mistrust and even resistance. Just do an internet search on the Tuskegee study, the forced hysterectomies/mass sterilization of Native American women, and the use of Henrietta Lacks "immortal cells," just to name a few... among many other examples of abuse and deceit, which both vindicates and explains their level of mistrust.
Anyway, those are hesitancy or refusal issues I can understand – sort of – but I am having a very difficult time maintaining rational discernment and unbiased perception when it comes to the recent years’ exemptions in the name of religion.
It’s not that I am unable to get on board in support of those religious freedoms and choices, but more so that I question the robust increase in religious exemptions over the past several years.
I question whether or not they are truly grounded in religious
doctrine or if they are simply politically driven.
I am forever bothered after learning that “...religious objection is often used by parents as an excuse to avoid the vaccination of their children...” rather than it being a real exception for vaccination (Pelcic, et al., 2016, para. 4).
Evaluation of Strengths and Challenges
The challenge for me is of course not opening my mouth to challenge the parent/guardian belief system or decision. The challenge is to not create a new brain injury category called shaken adult syndrome. The challenge is to educate and not persuade, to inform and not antagonize, to support and enlighten rather than judge and disparage. The challenge is to not go home at the end of the day, defeated, because every well child checkup resulted in a parent’s refusal to vaccinate.
The strengths are that I succeed in most of the above-listed dichotomies. At least for now, I keep my mouth shut, I don’t murder-shake the adults. I educate, inform, and enlighten. I don’t support the decision or choice, but I do support the fact that they get to make a decision or that they get to choose. Unfortunately, on more than one occasion I did go home at the end of the day fully defeated, because every well child checkup resulted in the parent’s refusal to vaccinate. But my strength is wearing thin, and I feel myself slipping. I feel myself slipping into judgment and irritability because my expectations are apparently too high to be met. But why should I lower my standards?
Analysis and Self Reflection
Well in true analytical fashion, I recognize that I am powerless over another’s choice, and that it is unethical for me to attempt to persuade a patient or their guardian/parent into a choice they don't want. Although my wily guiles are capable of persuasion in the most challenging circumstances, I recognize that as the medical provider I must remain unbiased (as much as possible) and objective. It is so hard to sit back and watch what is happening, inevitably, to our herd immunity status.
I think the scariest, most upsetting part for me, is that I catch myself being inched closer and closer to secretly make an “instawish” that the kid catches some preventable disease and suffers - just to “teach the parent a lesson.” THIS IS NOT WHO I AM OR WHO I WANT TO BE.
As if it is my job to "scold" and mother the patient or family. When I think about being turned into that person, I feel sick to my stomach, and am thankfully reminded that I will do whatever I can to never become that person.
I actually don’t even like movies where we are rooting for a protagonist that started off the movie by breaking the law or something, because the movie implicates excuses and triggers understanding as to reasons behind their unlawful or unethical behavior. I get caught up in it and then realize I have been rooting for a bad guy the whole time - and the movie tricked us all.
Take away:
My hope is that you take the following terms with you as you leave this page: shaken adult syndrome and murder-shake. Those were a 3am contribution to the post and I woke up the next day not remembering and also choosing not to remove them because they just add "flare" hahah
References
Advisory Committee on Immunization Practices (ACIP). (2023, June 27). ACIP recommendations. Centers for Disease Control and Prevention. https://www.cdc.gov/vaccines/acip/recommendations.html
Centers for Disease Control and Prevention (CDC). (n.d.). Immunization schedules. Catch-up immunization schedule for children and adolescents who start late or who are more than 1 month behind. https://www.cdc.gov/vaccines/schedules/hcp/imz/catchup.html
Kansas Department of Health and Environment (KDHE). (2019, March 4). Kansas statutes related to school immunizations. https://www.kdhe.ks.gov/DocumentCenter/View/1233/Kansas-Statutes-Related-to-School-Immunizations-PDF
Kansas Department of Health and Environment (KDHE). (n.d.). Immunization requirements. https://www.kdhe.ks.gov/324/Immunization-Requirements
Kansas Secretary of State. (2019, July 18). Kansas immunization regulations for school. Kansas Register, Vol. 38 No. 29. https://www.kdhe.ks.gov/DocumentCenter/View/21197/Kansas-Immunization-Regulations-for-School--Child-Care-PDF
Missouri Department of Health and Senior Services (MDHSS). (2022, December 1). Medical exemption - what you need to know. https://health.mo.gov/living/wellness/immunizations/pdf/immp12.pdf
Nationwide Children’s. (n.d.). Sleep in school-aged children. Nationwide Children’s Hospital. https://www.nationwidechildrens.org/specialties/sleep-disorder-center/sleep-in-school-aged-children
Pelcic, G., Karacic, S., Mikirtichan, G. L., Kubar, O. I., Leavitt, F. J., Cheng-Tek Tai, M., Morishita, N., Vuletic, S., Tomasevic, L. Religious exception for vaccination or religious excuses for avoiding vaccination. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5141457/
